The Role of Palliative Care in Caring for the Families of Patients With COVID-19
Betacoronavirus; Child; Child Care; communication; Communication; Coronavirus Infections/*therapy; Covid-19; decision-making; distress; family; Family/psychology; Humans; Palliative Care/methods; Pandemics; Pastoral Care; Pneumonia; Social Work; support; Viral/*therapy
In palliative care, we strive to provide care to the whole patient. When we think about the whole patient, we include the people who are important in our patients' lives. Our New York City-based palliative care team has found that caring for patients' loved ones has proven to be an even more important aspect of the care we have provided during the COVID epidemic. In this article, we describe the multicomponenet interdisciplinary interventions we have implemented to enhance our ability to create a therapeutic alliance with family members and facilitate the provision of goal concordant care to patients with COVID during this extremely difficult time.
Bakar M; Capano E; Patterson M; McIntyre B; Walsh C J
American Journal of Hospice and Palliative Care
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/1049909120931506" target="_blank" rel="noreferrer noopener">10.1177/1049909120931506</a>
Palliative care in an underserved community: Striving and thriving
awareness; bereavement support; bone marrow; cancer patient; Caribbean; child; childhood cancer; conference abstract; congenital malformation; coordination compound; ethnic group; Europe; female; heart; Hispanic; hospice; hospital patient; human; Japan; kidney; liver; major clinical study; male; medicaid; memory; Middle East; music therapy; neonatal intensive care unit; newborn; nursing education; pain; palliative therapy; pastoral care; perception; posthumous care; resident; sibling; social work; terminal care; terminally ill patient
Program Goals: Our program is uniquely positioned in a safety net hospital that serves as a large tertiary referral center for pediatric transplant, trauma and heart failure as well as being an international catchment area for the southern hemisphere. Meeting the palliative care needs of our medically complex and chronically ill children proves to be a tremendous challenge, oftentimes made worse by the fact that our most technology dependent children may be uninsured with families that have little to no resources. Despite the complexity of our population and our many financial and socioeconomic constraints, we have a burgeoning Pediatric Palliative Care (PPC) Service that strives to provide quality independent of our patients' circumstances. Evaluation: In 2008, we sought to institute PPC without having dedicated FTE's. By 2013, we had convened a consistent team with existing staff and improved the awareness and importance of palliative care. Our program has experienced significant growth and now consists of one full time PPC Nurse, one volunteer faculty physician, child life, music therapy, behavioral health, pastoral care, social work and volunteer services. In 2016, our team received 176 consults - a 76% increase from our initial efforts in 2013. The majority were for Pediatric Transplant patients including Bone Marrow, Cardiac, Renal, Liver, Intestinal and Multivisceral, accounting for 23% of our total. Pediatric Oncology was our next most frequent category at 20%. The third most common consultation was for complex congenital malformations and syndromes from the Neonatal ICU at 11%. 79% of our consults consisted of ethnic minorities (Black and Hispanic). Historically, our institution serves 80% Medicaid and 3% unfunded patients. Approximately 20% of our patient population consists of international referrals and in 2016 our consults included patients from the Middle East, Caribbean, South and Central America, Europe and Japan. Our services to patients include coordination of complex care, discharges to hospice, pain and symptom management, family and sibling support, field trips and even meal, transportation and gym access vouchers. We have facilitated international medical transportation of terminally ill children back to their countries of origin to provide a peaceful death surrounded by loved ones in a familiar environment. From our cumulative PPC census, there were 90 deaths in 2016. All members of our team assisted with inpatient end of life care, memory building, bereavement services and even funeral arrangements and expenses where possible.
Alladin A R; Juanico K; Webster-Carrion A; Nares M; Cantwell G P
Pediatrics
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Simple changes can improve conduct of end-of-life care in the intensive care unit.
Female; Humans; Male; Attitude of Health Personnel; Aged; Middle Aged; Resuscitation Orders; Intervention Studies; Patient Admission; Pastoral Care; retrospective studies; cause of death; DNAR; cardiopulmonary resuscitation; Intensive Care Units; Life Support Care; Palliative Care; Withholding Treatment; Analgesics/tu [Therapeutic Use]; Diazepam/tu [Therapeutic Use]; DNAR Outcomes; Hypnotics and Sedatives/tu [Therapeutic Use]; Nurses/px [Psychology]; Physicians/px [Psychology]
PURPOSE: To describe changes to the conduct of withdrawal of life support (WOLS) in two teaching hospital tertiary care medical surgical intensive care units (ICUs) in a single centre over two distinct time periods., METHODS: We used a retrospective chart review with a before and after comparison. We assessed aspects of end-of-life care for ICU patients dying after a WOLS before and after we introduced instruments to clarify do not resuscitate (DNR) orders and to standardize the WOLS process, sought family input into the conduct of end-of-life care, and modified physicians' orders regarding use of analgesia and sedation., RESULTS: One hundred thirty-eight patients died following life support withdrawal in the ICUs between July 1996 and June 1997 (PRE) and 168 patients died after a WOLS between May 1998 and April 1999 (POST). Time from ICU admission to WOLS (mean +/- SD) was shorter in the POST period (191 +/- 260 hr PRE vs 135 +/- 205 hr POST, P = 0.05). Fewer patients in the POST group received cardiopulmonary resuscitation in the 12-hr interval prior to death (PRE = 7; POST = 0: P < 0.05). Fewer comfort medications were used (PRE: 1.7 +/- 1.0 vs POST: 1.4 +/- 1.0; P < 0.05). Median cumulative dose of diazepam (PRE: 20.0 vs POST: 10.0 mg; P < 0.05) decreased. Documented involvement of physicians in WOLS discussions was unchanged but increased for pastoral care (PRE: 10/138 vs POST: 120/168 cases; P < 0.05). The majority of nurses (80%) felt that the DNR and WOLS checklists led to improved process around WOLS., CONCLUSION: Simple changes to the process of WOLS can improve conduct of end-of-life care in the ICU.
2004
Hall RI; Rocker GM; Murray D
Canadian Journal Of Anaesthesia
2004
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Journal Article
<a href="http://doi.org/10.1007/bf03018408" target="_blank" rel="noreferrer">10.1007/bf03018408</a>
The WHO objectives for palliative care: to what extent are we achieving them?
Professional-Family Relations; Health Services Research; Outcome Assessment (Health Care); Organizational Objectives; Holistic Health; Non-U.S. Gov't; Pastoral Care; social support; Human; Support; Health Priorities; Terminal Care/methods; Hospices/standards; World Health Organization; Palliative Care/standards
This paper examines recent research in palliative care in the light of the guiding principles set out by the World Health Organization. It outlines the gaps in the literature and suggests priorities for future research. Areas of unmet need are documented and it is argued that research comparing outcomes across care settings and relating particular care practices to outcome measures would help to set care targets. Further definition of the expected outcomes of psychological and spiritual care, as well as care for carers, is recommended. Available measures are reviewed and suggestions made for the development of additional measures. Finally, some key methodological problems are discussed, including making cross-setting comparisons, identifying appropriate outcome measures, prioritizing patients' own identification of outcomes, using different methodologies as death approaches, and combining different perspectives offered by patients, lay carers and professional carers. The role of qualitative data as an indicator of rating scale validity is discussed in this context.
1995
Johnston G; Abraham C
Palliative Medicine
1995
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
Factors important to patients' quality of life at the end of life
Female; Humans; Male; United States; Neoplasms; Terminal Care; Physician-Patient Relations; Terminally Ill; Adult; Follow-Up Studies; Prospective Studies; Aged; Middle Aged; Attitude to Death; caregivers; Drug Therapy; quality of life; Models; Meditation; Pastoral Care; Statistical
BACKGROUND: When curative treatments are no longer options for patients dying of cancer, the focus of care often turns from prolonging life to promoting quality of life (QOL). Few data exist on what predicts better QOL at the end of life (EOL) for advanced cancer patients. The purpose of this study was to determine the factors that most influence QOL at the EOL, thereby identifying promising targets for interventions to promote QOL at the EOL. METHODS: Coping With Cancer is a US multisite, prospective, longitudinal cohort study of 396 advanced cancer patients and their informal caregivers who were enrolled from September 1, 2002, through February 28, 2008. Patients were followed up from enrollment to death a median of 4.1 months later. Patient QOL in the last week of life was a primary outcome of Coping With Cancer and the present report. RESULTS: The following set of 9 factors, preceded by a sign indicating the direction of the effect and presented in rank order of importance, explained the most variance in patients' QOL at the EOL: 1 = (-) intensive care unit stays in the final week (explained 4.4% of the variance in QOL at the EOL), 2 = (-) hospital deaths (2.7%), 3 = (-) patient worry at baseline (2.7%), 4 = (+) religious prayer or meditation at baseline (2.5%), 5 = site of cancer care (1.8%), 6 = (-) feeding-tube use in the final week (1.1%), 7 = (+) pastoral care within the hospital or clinic (1.0%), 8 = (-) chemotherapy in the final week (0.8%), and 9 = (+) patient-physician therapeutic alliance at baseline (0.7%). The vast majority of the variance in QOL at the EOL, however, remained unexplained. CONCLUSION: Advanced cancer patients who avoid hospitalizations and the intensive care unit, who are less worried, who pray or meditate, who are visited by a pastor in the hospital/clinic, and who feel a therapeutic alliance with their physicians have the highest QOL at the EOL.
Zhang B; Nilsson ME; Prigerson HG
Archives Of Internal Medicine
2012
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Journal Article
<a href="http://doi.org/10.1001/archinternmed.2012.2364" target="_blank" rel="noreferrer">10.1001/archinternmed.2012.2364</a>
The Provision Of Spiritual And Pastoral Care Following Stillbirth In Ireland: A Mixed Methods Study
Attitude To Death; Bereavement; Chaplaincy Service Hospital/standards; Female; Hospitals Maternity/organization & Administration; Humans; Ireland; Male; Pastoral Care; Pregnancy; Professional-family Relations; Spirituality; Stillbirth/psychology
Bereavement; Chaplain; Pastoral Care; Spiritual Care; Stillbirth
Background The death of a baby is recognised as one of the most difficult bereavements with life-long impact for parents. How bereaved parents are cared for influences their grief journey. Optimal holistic care is provided when the physical, emotional, spiritual and social needs of parents are attended to. This study reviewed how spiritual care is provided to bereaved parents following stillbirth in maternity units in Ireland and the impact of stillbirth on healthcare chaplains.
Methods This was a mixed methods study using semistructured qualitative interviews with hospital chaplains in Irish maternity units. Quantitative data about the provision of services to bereaved parents were collated from the interviews. Qualitative data were analysed thematically to identify key themes.
Results 20 chaplains from 17 units participated in the study (85% of Irish maternity units). 12 chaplains (60%) are formally accredited chaplains; only one has received specialist training in perinatal bereavement care. 11 chaplains (55%) provide follow-up bereavement care. Seven chaplains (35%) did not feel part of the multidisciplinary team. The main themes that emerged were the impact of stillbirth, suffering and the challenge to faith creating inner conflict and doubt.
Conclusions The provision of spiritual care following stillbirth in Ireland is diverse. Spiritual care in this specialised area by chaplains who are not professionally trained and accredited potentially impacts quality and depth of care. Chaplains experience considerable impact and challenge to personal faith and belief as they provide care. Recommendations are made for ongoing education and greater support for chaplains.
Daniel Nuzum; Sarah Meaney; Keelin O'Donoghue
Bmj Supportive & Palliative Care
2014
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://dx.doi.org/10.1136/bmjspcare-2013-000533"></a>
End-of-life Conversation Game Increases Confidence For Having End-of-life Conversations For Chaplains-in-training
Communication; End-of-life Conversations; Health Games; Palliative Care; Pastoral Care; Terminal Care
CONTEXT: Discussing end-of-life issues with patients is an essential role for chaplains. Few tools are available to help chaplains-in-training develop end-of-life communication skills. OBJECTIVE: This study aimed to determine whether playing an end-of-life conversation game increases the confidence for chaplain-in-trainings to discuss end-of-life issues with patients. METHODS: We used a convergent mixed methods design. Chaplains-in-training played the end-of-life conversation game twice over 2 weeks. For each game, pre- and postgame questionnaires measured confidence discussing end-of-life issues with patients and emotional affect. Between games, chaplains-in-training discussed end-of-life issues with an inpatient. One week after game 2, chaplains-in-training were individually interviewed. Quantitative data were analyzed using descriptive statistics and Wilcoxon rank-sum t tests. Content analysis identified interview themes. Quantitative and qualitative data sets were then integrated using a joint display. RESULTS: Twenty-three chaplains-in-training (52% female; 87% Caucasian; 70% were in year 1 of training) completed the study. Confidence scores (scale: 15-75; 75 = very confident) increased significantly after each game, increasing by 10.0 points from pregame 1 to postgame 2 ( P < .001). Positive affect subscale scores also increased significantly after each game, and shyness subscale scores decreased significantly after each game. Content analysis found that chaplains-in-training found the game to be a positive, useful experience and reported that playing twice was beneficial (not redundant). CONCLUSION: Mixed methods analysis suggest that an end-of-life conversation game is a useful tool that can increase chaplain-in-trainings' confidence for initiating end-of-life discussions with patients. A larger sample size is needed to confirm these findings.
Van Scoy L J; Watson-Martin E; Bohr T A; Levi B H; Green M J
American Journal Of Hospice And Palliative Medicine
2017
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
10.1177/1049909117723619